Xander Nunez was born with an unrelated heart defect that required a heart transplant at 5 months old. In September 2019, a year after his transplant with a healthy new heart, he started vomiting repetitively and pointing to the top of his torso. At the time we thought he was facing organ rejection. He showed no other signs or symptoms but he was only 1 year old and could not verbally communicate exactly what was hurting him. We immediately took him to our children’s ER hospital. Due to his heart transplant, Xander was monitored and had blood work taken weekly prior to his cancer diagnosis. He was familiar with the medical life and his heart was looking phenomenal. Even after every appointment, the doctors never detected the cancer until he was seen for his repetitive vomiting.
     Xander was diagnosed with Hepatoblastoma after being seen by cardiologists. This was a heavy blow to us after already enduring the heartache of our son having open heart surgery. I would like to credit that most of Xander’s doctors were cardiologists and never oncology doctors detecting his cancer. This type of cancer is a rare tumor that originates in cells in the liver. It is the most common cancerous liver tumor in early childhood. Most hepatoblastoma tumors begin in the right lobe of the liver. Symptoms include a lump, swelling, or pain in the abdomen, weight loss and vomiting. The 5-year survival rate depends upon staging at diagnosis.
 
     Children with fully resected tumors have a greater than 85% chance of survival. The rate is roughly 60% for those with metastatic disease that responds to chemotherapy.
Xander completed over 10 rounds of different chemotherapy treatment. He had his liver resected in October of 2019 which means they surgically removed half. In February of 2020 in a pandemic, his cancer relapsed and he required a liver transplant which required them to reopen the same incision he had from his previous liver surgery. In April 2020, he received a liver transplant from another organ donor. The cancer went undetected for 3 months until his liver biopsy results showed cancer cells had reached his portal vein, a main blood vessel. Tiny micro molecules of cancer had been spreading throughout his body. Watching our son go through such horrific treatments as well as enduring such pain was almost more than we could bare. But our son remained such a brave warrior and showed such strength.
     We had exhausted all treatments for Xander. He then started palliative care and experimental treatments in July 2020. We started him on a medical cannabis oil for pain management. We attempted an adult pill trial drug for anti-cancer but it was never tested on children. Our hope was to shrink his type of cancer cells. Because he was unable swallow large pills, we were required to break up the toxic drug into powder, mix with water and forcefully plunge 50-60 mls of that solution into his mouth with a syringe. This was extremely difficult on our son. These drugs were meant for adults and not children but no other options were given. There were no changes to his tumor levels and he was left with awful side effects. Xander had an ulcer on his tongue the size of a dime that had to be surgically removed and he was placed with a feeding tube to eat.
     Approximately 10,470 children in the United States under the age of 15, will be diagnosed with cancer in 2022. After accidents, cancer is the second leading cause of death in children ages 1 to 14. Roughly 1,050 children under the age of 15 are expected to die from cancer in 2022. Globally there are more than 300,000 children diagnosed with cancer each year. Every 3 minutes, somewhere in the world a family hears the devastating words that their child has cancer. Over the past 40 years, the number of children diagnosed with cancer has increased 35%. Although survival rates for many types of childhood cancer have improved, for too many children, cancer will shorten their lives too soon. This is one reason it is so crucial that we see the 4% federal funding rise to at least 8%.

     Sadly, we were told his cancer would eventually take over and that there were no other alternatives. We were extremely devastated and the reality was deeply settling in but we remained hopeful and as optimistic as we could for our son. To give us one more month and more time with our boy, our final option was radiation therapy. A week long, daily treatment under anesthesia to shrink the tumors in his liver as much as possible. This was not an easy decision but one we felt mattered enough. We were not ready to give up. We could not let cancer win. We wanted to give our son one more chance at the life he deserved.

     We did our best to enjoy our Halloween and Thanksgiving that year with Xander. We took our last family photo together and a week later our sweet son passed away on December 2, 2020. From the time of his cancer diagnosis, we had 15 months left with him. Before surrendering to cancer, he survived a heart transplant, liver resection, and liver transplant. I share his story because no child or parent should have to endure what we went through. We beg for more research to be funded for childhood cancer. We are extremely passionate about advocating and spreading childhood cancer awareness to anyone who will listen. There are far too many children who have succumbed to this horrific disease. Too many who will never be heard so it is extremely important to us that we be Xander’s voice. We refuse to give up until something more is done.

     The federal government is allocating a trivial 4% for federal funding for childhood cancer research. This is not even close to being enough funding to make a difference for these children. By signing this petition, you will help facilitate lobbying and the advance of a healthcare policy that will reserve a higher percentage of resources for childhood cancer research. This will give researchers more funding to do more testing and potentially find a vaccine. Ultimately, this would decrease the number of treatments these children would have to undergo as well as eliminate much of their pain and fear. Please sign and share this petition and help us make a difference.

PHILADELPHIA, PENNSYLVANIA